There are more than 100,000 people waiting for kidney transplants in the United States. Over 3,000 new people are added to the kidney waiting list each month on average. We spoke with Kelli Collins, Senior Director of Patient Services for the National Kidney Foundation, to find out how transplant candidates can get a better understanding of their condition and the costs associated with transplantation.
Can waiting for a transplant take a toll?
Waiting for or receiving a transplant can be difficult emotionally. The transplant evaluation is extensive and requires multiple appointments and follow-ups. Some tests need to be redone each year to keep information up to date. The waiting list can be long: in the U.S., you could wait for a kidney for between three to seven years or longer depending on your age, blood type and other factors. Living donation can also be emotionally charged, especially if people expected to offer their kidney do not, or those who offer turn out not to be a good match.
Waiting for a transplant can take an emotional toll.
What are some things you can do to prepare for a transplant?
Make sure that you take good care of yourself and follow the care plan you create with your health care practitioner while you wait for a transplant. Following a kidney-friendly diet, maintaining a healthy weight, taking your medications and attending medical appointments as required are vital parts of staying healthy while waiting for a transplant. It’s also important to plan ahead for potential financial burdens post-transplant.
Follow care advice, including maintaining a kidney-friendly diet
What’s the best way to help someone who is listed for a kidney transplant?
Most people are not familiar with the effects of kidney disease and what dialysis or a transplant entails. Talk with your friends or family members about how they are feeling and ask them how you can help support them. Often just having someone acknowledge and listen to their feelings or concerns is helpful.
Acknowledge your loved one’s thoughts and concerns
Kidney failure affects the entire family, so relationships may become strained as everyone tries to cope and support the patient. Talk to each other and seek professional support as needed. If you are facing kidney failure or preparing for a transplant, remember that you are not alone. There are many resources that can support you along the way. Understanding the process and being prepared will make you feel more confident in managing your condition.
What are some of the most common transplant-related questions you receive through the NKF Cares Helpline?
NKF Cares most often receives questions from patients and family members looking for guidance on how to get on the transplant list or for general information about what the transplant evaluation and surgery entails. Additionally, we receive calls from people seeking financial assistance resources either to help with the costs related to transplant surgery or for helping to cover medications after transplant. We also receive calls from people interested in living donation or patients interested in materials on living donation to share with their friends and family.
The NKF Cares Helpline offers transplant general info, guidance and support
What is the most common transplant misconception you have heard?
The most common myth is that a transplant is a cure for kidney disease. This is not the case; a transplant is a treatment option. It is often viewed as an ideal option because a successful transplant allows patients to return to living close-to-normal lives. But after receiving a transplant, patients need to be vigilant about taking their prescribed medications daily to keep their body from rejecting the transplanted kidney. Patients must follow a healthy diet, exercise regularly and follow up with their care team to monitor kidney function and overall health.
What transplant-related expenses do candidates need to prepare for?
The expenses you incur depend on the type of insurance coverage you have. If you have Medicare due to kidney failure, this coverage will end three years after your transplant. Additionally, Medicare only covers 80 percent of the cost of immunosuppressant medications. These medications can be very expensive. Co-pays are usually a set fee for each prescription. Co-insurance is a percentage of the total cost of the medication; for example, you may be responsible for 20 percent ($2) of a $10 medication. But for a medication that costs $10,000 per month, you would be responsible for $2,000.
Talk to your team about financially preparing for a transplant.
It can be difficult to completely anticipate all costs associated with transplant, so talk with your transplant team about what to expect so you can plan accordingly. We offer resources and tools to help you consider costs, plan for those expenses and learn more about common insurance terminology.
Right now, tens of thousands of people with kidney disease are considering or planning for a kidney transplant. If this is an option you’re starting to explore, you probably have lots of questions, and you may not even know where to start. We’re here to help.
Like any journey, getting a transplant begins with a few initial steps. Knowing what steps to take and when to take them is important, so we’ve outlined some of the information that you’ll need to get started.
If you or a loved one has kidney disease, it’s never too early to prepare for a kidney transplant. The sooner you start planning, the earlier you may be able to find a kidney. Getting a kidney transplant is a very personal experience, so you and your doctor should focus on making decisions and taking steps that are right for you and your health.
6 Steps to Starting Your Transplant Journey
Ready to get started? Below is a list of typical steps in the process of getting a kidney transplant. This information can help you figure out what to do now, as well as what to do (or expect) next.
- Discuss planning for kidney transplant with your doctor: Together you can decide if a kidney transplant is a good option—based on your health, wellbeing, and goals.
- Learn all you can about kidney transplants: The more you know, the better you’ll be able to decide what’s right for you and your health.
- Contact your local transplant center: Set up an appointment to learn about your next steps. If there’s more than one transplant center in your region, call each of them. The transplant center will order any necessary medical tests, which are a requirement before you can be added to the national kidney transplant waitlist.
- Start seeking a kidney donor: There are two basic ways to find a donor match.
through family, friends, or acquaintances.
- Register on the national kidney transplant waitlist for a donor kidney. The waitlist is managed by the United Network for Organ Sharing (UNOS).
Transplant Centers: Your Questions Answered
Organ transplants of all kinds are performed at specialty transplant centers. These centers are fully equipped for transplant surgery and staffed by expert care teams who are trained to educate both recipients and living donors on how to prepare for a kidney transplant. Most transplant centers are part of a hospital.
Should I register at more than one transplant center?
Yes. If there’s more than one transplant center near you, it’s recommended that you request referrals from your doctor and register at more than one center. This is called “multiple listing.” Since the travel distance between donor and recipient is a key consideration, having multiple listings may give you a better chance of getting a nearby kidney.
When should I be referred to a transplant center?
Discuss planning for kidney transplant as early as possible with your doctor. Referrals to a transplant center are typically made in stage 4 or stage 5 of chronic kidney disease (CKD). Getting accepted as a patient at the transplant center means you’ll be ready as soon as you find a kidney donor. If you are fortunate enough to get a transplant before your kidneys fail, you may be able to avoid dialysis.
How do I find a transplant center near me?
Ask your doctor for a referral to the nearest transplant center. To search all available kidney transplant centers in your region, visit the Organ Procurement and Transplantation Network (OPTN) and start by selecting “Transplant Centers by Organ.”
TIP: When choosing a transplant center, consider these factors:
- Coverage and cost under your insurance
- Whether the center performs living donations
- Location and ease of travel to and from the center
- If the center participates in a *paired kidney exchange program
*A paired kidney exchange program allows for a donor/recipient who may not be well matched to “swap” donors with another donor/recipient.
What do I need to know about insurance and the cost of a kidney transplant?
Insurance coverage for a kidney transplant varies by insurer and plan. It’s important to find out about all associated costs ahead of time, so you know what to expect.
Note: Private insurance and Medicare typically cover about 80 percent of initial surgery and medication costs. A transplant insurance coordinator may be available to help you better understand your coverage to avoid gaps and be better prepared for your transplant. Your transplant center will also have a financial coordinator and/or social worker who can help you understand your insurance coverage and answer any questions.
If you’re considering or planning for kidney transplant, you may have more questions than answers. Fortunately, there are many ways to educate yourself, and you can start today! We’ve provided several helpful steps to take as you learn how to prepare for a kidney transplant, and there are plenty of professionals and experts you can turn to along the way. As always, we recommend first talking with your doctor about big medical decisions such as this one.
If you’ve been diagnosed with chronic kidney disease (CKD), there’s a chance you’ll eventually need a kidney transplant, which means you would need to undergo major surgery. Just as with any surgery, there are some important steps to take before the procedure if you want the best chance at a smooth recovery. Here’s what to do while you await the day of your kidney transplant.
Important Things to Do Before a Kidney Transplant
Attend all doctor appointments
Your team of doctors will be in close contact with you leading up to the kidney transplant. Avoid having to delay appointments, or tests, as your doctors need to stay in touch to ensure you stay healthy before the day of your surgery. You’ll also have some medications to take before the kidney transplant, and seeing your doctors regularly will help you keep up with this routine.
If you smoke, it’s important to quit before the procedure, otherwise you increase your chance of facing life-threatening complications after surgery. Additionally, smoking can slow your recovery after a kidney transplant. If you’re having trouble quitting, talk to your doctor to get help.
One of the best ways to be healthy before a kidney transplant is to maintain an active lifestyle. Regular exercise can help regulate weight, which is important when you have CKD. Studies show that a sedentary lifestyle can lead to complications during, and after surgery, so it’s best to get at least an accumulative 150 minutes of moderate physical activity every week.
Follow a healthy diet
Another way to maintain your weight before the kidney transplant is to eat a balanced diet. In particular, your team of doctors might suggest a kidney-friendly diet to you, which involves limiting the levels of sodium, potassium, and phosphorus in your diet. Talk to your doctor to find out if you need this kind of diet before your kidney transplant.
Know what to expect from your kidney transplant
Your medical team should be keeping you informed on what to expect from surgery, and a transplant coordinator, or someone in a similar role, to guide you on how to prepare and recuperate.
Discuss with this person what to bring to the procedure, approximately how long it will take to heal, and what items you’ll need during recovery. Knowing this information should bring you peace of mind while you wait for a kidney transplant.
Get the Care You Deserve
Whether you have CKD and are not sure if you need a kidney transplant yet, or you’re already on the list to get a donor kidney, you deserve access to doctors with years of experience treating kidney problems. If you have questions about kidney transplants or chronic kidney disease, contact us today at Texas Kidney Institute to learn more!
How do you know if you’re a candidate for a kidney transplant? What is Title XXII? What are the criteria for getting listed at a transplant center? What are the benefits of receiving a transplant? Have you ever heard of a “telephone tree”? Do you have questions about transplantation? Lori and Stephen visit with this week’s guest, Jacki Harris, RN a certified clinical transplant coordinator about preparing for a kidney transplant. Tune in and listen to KidneyTalk! as Lori and Stephen ask the hard questions and Jacki provides the answers.
You can also listen to the podcast on iTunes.
With your Hosts…
Stephen Furst got his big break into movies in “Animal House,” in which he played Flounder. Stephen has also starred as Dr. Elliot Axelrod in “St. Elsewhere” and as Vir Cotto in “Babylon5.” He is a successful television and movie producer/director and a kidney patient.
Lori Hartwell is the Founder & President of Renal Support Network (RSN) and the host of KidneyTalk®, a radio podcast show. Lori was diagnosed with kidney disease at the age of two. In 1993 she founded RSN to instill “health, happiness and hope” into the lives of those affected by chronic kidney disease. Lori is also the author of the inspirational bookChronically Happy: Joyful Living in Spite of Chronic Illnessand is a four-time kidney transplant recipient.
Once you learn you are a candidate for an organ transplant, you may think you can sit back, relax a little, and wait for that phone call telling you it’s time for surgery.
Nothing could be further from the truth, say transplant experts.
The time before the transplant is the best time to devote yourself to preparing mentally, physically, and financially. This article can get you started.
Getting Into the Organ Transplant Mindset
An organ transplant’s psychological impact must be addressed. While your transplant team can tell you what to expect, they probably haven’t experienced it firsthand. It helps your health care team to know what you’re going through, says Penelope Loughhead, LMSW, a transplant social worker at Memorial Hermann Hospital in Houston.
Along with sharing your thoughts and needs with your team, Loughhead aIso thinks it’s beneficial to talk to someone who has gotten an organ like the one you are waiting for. When you’re ready to connect with someone this way, ask your transplant team’s social worker to help you.
While the waiting time for your organ transplant might seem difficult, you can use this time to come to grips with what’s going on, says Gigi Spicer, RN, former vice president of transplant for Tulane Health System. Typically, she said, it takes candidates a few months to get used to the idea of the organ transplant and how it will change their life.
Though everyone waiting for a transplant needs time to cope with the fact that their health isn’t what it was, Spicer advises candidates to adopt an optimistic attitude. Something like: “I am not the disease. I am still who I was. I just happen to have this problem, but my problem can be worked with and my life can be richer.”
Looking at Your Lifestyle Before an Organ Transplant
Often, organ transplant candidates need to make some substantial lifestyle changes, such as losing a moderate or large amount of weight or stopping smoking, says Spicer.
That can be hard for some, Spicer said. Candidates are often willing participants in the high-tech aspects of an organ transplant but may drag their feet on lifestyle changes or deny that changes are even necessary.
That’s when you need to cultivate a little perspective, recommends Spicer, and decide on just what the transplant is worth to you.
Handling the Financing of an Organ Transplant
Whatever the organ, transplants are expensive. For instance, the billed costs for a heart transplant in 2020 (including organ procurement, immunosuppressant drugs, and hospital admissions) was nearly $1.7 million, according to Milliman, a health care management consulting company. In the same year, billed costs for a kidney transplant were $442,000, while a double lung transplant cost $1.3 million.
Insurance coverage for an organ transplant varies widely. But one thing’s nearly certain, says Marwan Abouljoud, MD, director of the Transplant Institute at Henry Ford Hospital System in Detroit: Most patients will have some issue about insurance.
Abouljoud counsels patients to work closely with their center’s transplant team, particularly the social worker and financial coordinator, to figure out the funding sources.
Typically, the transplant center officials tell you what is covered by your insurance. You should also check directly with your insurer to confirm your plan’s benefits and any steps you’ll need to take to ensure you are covered. Once you find out what part of the bill insurance covers, talk with your transplant team about other possible sources of coverage to help pay for your care. Medicare, for instance, could be available to those who are disabled or who have end-stage kidney disease.
You can also check with your state’s insurance commissioner to see if any plans might help out. For instance, certain people, even with pre-existing health conditions, can qualify for high-risk pools. Be aware that the premiums are higher than other plans and the coverage typically more limited. You can ask about guarantee issue plans, available in some states. These require insurers to offer coverage to individuals even with pre-existing conditions.
In addition to the direct medical costs, an organ transplant is associated with other expenses, such as lodging if you are traveling away from home to a transplant center, your lost wages if you have been working, airplane costs if you are traveling to a center, and extra child care fees if you have young children.
To cover these nonmedical costs, as well as some of the uncovered medical expenses, you can check out various charitable and advocacy groups, such as the National Transplant Assistance Fund or the American Kidney Fund. A lengthy list of organizations is posted at the consumer website maintained by UNOS, called “Transplant Living.”
If you decide to take the fundraising into your own hands, sponsoring a car wash or asking for donations from your church or temple members, for instance, get advice first about legalities from your transplant team and your accountant. Different city and county regulations come into play, and the money you raise may be counted as taxable income, perhaps affecting your eligibility for assistance programs.
Questions to Ask Your Doctor About Organ Transplants
Even if you’ve tended to your mental, physical, and financial preparation, it’s common to have a lengthy list of questions about your organ transplant.
One of the most common is how much advance notice you’ll get that an organ has been found.
The answer varies by organ, says Abouljoud, who performs liver transplants. For liver organs, he says, you may typically get a call from the hospital two or three hours before they expect you there. For kidney transplants it may be between 24 to 30 hours’ notice. But in general, how soon the transplant team expects you depends on a number of factors, including your health condition.
You may have heard discussions about “matching” and kidney transplantation. There are actually three tests that are done to evaluate donors. They are blood type, crossmatch, and HLA testing. This blood test is the first step in the process of living donation and determines if you are compatible or a “match” to your recipient.
There are 4 different blood types. The most common blood type in the population is type O. The next most common is blood type A, then B, and the rarest is blood type AB. The blood type of the donor must be compatible with the recipient. The rules for blood type in transplantation are the same as they are for blood transfusion. Some blood types can give to others and some may not. Blood type O is considered the universal donor. People with blood type O can give to any other blood type. Blood type AB is called the universal recipient because they can receive an organ or blood from people with any blood type. The chart below shows which blood type can donate to which.
|If your blood type is:||You can donate to these blood types:|
|TYPE O||TYPE O, A, B, AB|
|TYPE A||TYPE A, AB|
|TYPE B||TYPE B, AB|
|TYPE AB||TYPE AB|
HLA typing is also called “tissue typing”. HLA stands for human leukocyte antigen. Antigens are proteins on the cells in the body. Out of over 100 different antigens that have been identified, there are six that have been shown to be the most important in organ transplantation. Of these six antigens, we inherit three from each parent.
Except in cases of identical twins and some siblings, it is rare to get a six-antigen match between two people, especially if they are unrelated. Kidneys are very successfully transplanted between two people with no matching antigens.
A person can make antibodies against another person’s HLA antigens. Antibodies can result from blood transfusions, pregnancy, infections or even a viral illness. Having one of these events does not mean a person will make antibodies but they could. If a recipient has strong antibodies against a donor’s HLA, the risk of rejection is high and a donor would be declined for that recipient.
For many people with kidney failure, getting a kidney transplant is a tremendous gift that allows them to have a greater quality of life. Receiving a new kidney is often considered preferable to ongoing dialysis treatments. After a transplant, it’s important to take follow-up care seriously so they have a successful transplant. Below, we’ve gathered some tips for kidney transplant recovery that can help you adjust to your new life post-transplant.
1. Go To All Of Your Checkups
At the beginning of kidney transplant recovery, you will have frequent checkups with your transplant team, especially in the first year to monitor how well you are healing and check for signs of transplant rejection. As time goes by, you will have fewer checkups but you will still need to see your transplant team regularly to check your kidney function and make sure you are taking the right amount of medication.
2. Take Your Medication As Directed
After an organ transplant, you will need to take immunosuppressant anti-rejection medication for the rest of your life so that your body’s immune system does not attack the new organ. You will also be prescribed medications to prevent infection after your transplant. Take all of your medications as directed by the transplant team.
3. Take Steps to Avoid Infection
One of the biggest risks after an organ transplant is infection. Anti-rejection medications lower your immune system and make you more vulnerable to infection. If you have signs of infection such as sores, wounds that don’t heal, UTI symptoms, or respiratory infection symptoms, contact your doctor for evaluation.
- Wash your hands well and regularly
- Maintain good overall hygiene
- Practice safe food handling
- Let your doctor know about any travel plans
- Avoid contact with people who have contagious illnesses
- Avoid contact with children or adults who have been recently vaccinated with live vaccines or the nasal flu vaccine
Some vaccines are not safe after a transplant. According to the National Kidney Foundation, you should avoid live vaccines and the nasal influenza vaccine. You can get a regular flu shot, but you need to wait 3-6 months after your transplant and get your doctor’s approval.
4. Maintain a Healthy Weight
After a kidney transplant, you are likely to gain weight due to side-effects from your new medications. It’s important that you avoid gaining too much weight and maintain a healthy weight by paying attention to your diet and staying physically active. Being overweight or obese increases your risk of heart disease and diabetes.
5. Pay Attention to Your Diet
Your diet during kidney transplant recovery will be different than the diet you were on during dialysis. It will likely be less restrictive and include more food options, but you still need to stick to certain guidelines. You should work with your doctor or get a referral to a dietician if you do not already have one.
6. Stay Active
After your kidney transplant, physical activity should become a part of your normal routine. Early in recovery, you should start by walking as much as you can. Then you can gradually incorporate more exercise and activity into your weekly routine. When your doctor gives you the go-ahead, you should get at least 30 minutes of moderate-intensity exercise five days a week.
7. Monitor Your Mental Health
During kidney transplant recovery, you may experience the symptoms of depression or anxiety. Your body is healing from the trauma of surgery and your emotions may be overwhelmed by all the new things that are happening. If you experience symptoms of anxiety or depression, talk to your healthcare team to see if you might benefit from treatment.
8. Pace Yourself
It’s important that you keep in mind that kidney transplant recovery doesn’t happen overnight. It’s a longterm process. Even when you have healed from the surgery, recovery takes time and many changes will be permanent. Recovery is also different for each person. Listen to your body and your transplant team and embrace the process that leads to a better quality of life.
At Durham Nephrology, we provide comprehensive care to patients in Durham and Oxford, NC with kidney disease and high blood pressure. Our team is experienced in kidney transplants and can help you throughout your recovery from the transplant. If you have questions about recovering from a kidney transplant, call us at 919-477-3005 to talk to a staff member and make an appointment.
When you visit our offices, you can be confident that we are taking the necessary precautions to protect the health of our patients as well as our staff. We are following all guidelines for sanitization, social distancing, and face coverings.
This article was medically reviewed by Raj Vuppalanchi, MD. Dr. Raj Vuppalanchi is an Academic Hepatologist, a Professor of Medicine at Indiana University School of Medicine, and the Director of Clinical Hepatology at IU Health. With over ten years of experience, Dr. Vuppalanchi runs a clinical practice and provides care to patients with various liver disorders at the University Hospital in Indianapolis. He completed dual fellowships in Clinical Pharmacology and Gastroenterology-Hepatology at Indiana University School of Medicine. Dr. Raj Vuppalanchi is board certified in Internal Medicine and Gastroenterology by the American Board of Internal Medicine and is a member of the American Association for Study of Liver Diseases and the American College of Gastroenterology. His patient-oriented research is dedicated to finding new treatments for various liver disorders as well as the use of diagnostic tests for non-invasive estimation of liver fibrosis (transient elastography) and portal hypertension (spleen stiffness).
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Liver Transplant surgery is carried out to replace a diseased liver with a healthy liver from another person (donor). It may be the entire organ (in case of deceased donors) or a part of the healthy liver (living donor transplant). This is fast becoming a popular end-stage treatment for many liver diseases or liver failure. Liver transplant candidates have a wide range of tasks and considerations to take care of after they have been referred for a possible transplant. From financial and emotional to physical considerations, knowing how to prepare for a liver transplant will help prepare you as the patient for the long road ahead.